Tuesday, May 24, 2011

Jordan Klausner: An inspiring Conductive Education story.

There are many inspiring stories of children with Cerebral Palsy. Jordan Klausner was a young Florida boy whose parents decided to try Conductive Education to make him better , and when he passed away to start an organization and a school in his name to help other children. His story is unusual because he inspired a movement. Although his family never got to see all the wonders Conductive Education can do, it's because of him that we can offer hope to other kids and other parents. And it is not an easy task. In America, the Peto method is still viewed with suspicion; it is not funded by insurance, the information is not widely available. Yet we struggle every year to o provide it free of charge to Florida residents, relying on grants, donations and scholarship. And we celebrate Jordan's life through progress that other kids make.
From our website:
The Jordan Klausner Foundation was Founded in Memory of Jordan Klausner
Jordan Hamilton Klausner was born on May 12, 1993. Due to complications at birth he lost substantial body control as a result of cerebral palsy. During his life he displayed great courage and determination to overcome his disabilities in an effort to freely and openly participate in social and educational endeavors. Most of all, Jordan was a very bright and happy child who brought smiles to all who knew him. It is in this spirit that the Jordan Klausner Foundation recognizes there is a substantial benefit to individuals and society by appropriately and comprehensively educating children with disabilities.

Jordan received conductive education from age two until his untimely death on December 16, 1997. During this time he worked diligently to improve his body control and communication. Despite his disabilities, he was a child who was full of enthusiasm, joy, and appreciation for life. Jordan we miss you. 
e following poem, written by Dr. Dan Johnson in December, 1997, captures the inner beauty of Jordan.
Jordan Hamilton Klausner

To know love just look at his face,
To feel Joy, with Jordan, it's all over the place!
Sometimes when his body isn't fully free,
the spirit inside is free to be,
unrestrained and unrestricted. He invited us to see
what deep inside we so much wanted to be.....
The spirit of a sky diver-his motto "no fear!"
He'd make you laugh and laugh 'til your eyes filled with tears!

There wasn't anything he wouldn't try.
Work he did four hours a day...oh my!
To get stronger and better-to push further ahead
and amazing young man-let it be said.
He couldn't speak, but oh what he said!
"I want more pizza-not this lousy bread!"
If you wanted to know if your food was just right,
give it to Jordan to taste...to your joy or fright!

At Disney World, he rode every ride,
He was an expert at "Stunts", there was no one beside!
He loved his books..."would you come now and read?"
Somehow he made you know whatever he'd need.
Horseback riding was his delight.
Tall in the saddle he was just so right.
"Let's go outside, it's too calm in here....
"Throw me the football"...we can almost hear.
For playing in Heaven he surely must be....
Running and jumping and riding with glee!

How can one boy teach us so many things?
How to love, how to laugh, how to make our souls sing.
Jordan you've done far more than heavan could ask.
You've finished your work, you've completed your task.
The next time we're afraid to love or let go,
we'll remember your smile, your laugh and we'll know....
There was a little boy who in his own remarkable way
said "Oh, go ahead-Carpe Diem-seize the day!"
We'll draw on your courage and be blessed by your joy
and in this season we remember others,
Who, like you, came to show us how to love.
Now you're together forever in your home up above.
--Dr. Dan Johnson
 Please follow us on Twitter @jklausnerfound andd like us on Facebook: http://www.facebook.com/jordanklausnerfoundation

Friday, May 20, 2011

Moving to America

I wasn't sure if moving to United States would work out for me. Looking back, it feels obvious. It was the right decision that gave me a chance at a life I always wanted, that I never dared to dream having. But seven years ago it wasn't.  On many levels I felt accomplished. I graduated with honors from the top law school in my country, I was starting up a foundation for disabled students in Warsaw and I was gaining recognition as a media writer for some of the top websites back home. And I guess I never told any of my friends the real reason why I jumped at the opportunity to go back to school in America. I  haven't felt happy in years. I rememember working on my computer in my room one New Year's Eve just like any other night and I imagined how my live would look like twenty years down the line. And I saw myself sitting in front of that very computer, with very little to none social life, expressing myself and living it out through the internet. Because no matter how accomplished I'd become, how impressed people would be with my independence or my physical state, I still was a guy inn a wheelchair in a very wheelchair inaccessible reality. I felt stuck. Stuck in my life, stuck in my apartment. Some would say, I suffered a depression, a mid-life crisis in my mid 20's after graduation. I'd say it's just the opposite. The limitations put on me were not in my mind and they were real. If I wanted to go see a movie or go out, I had to order a para transit system 10 days in advance. The scholarship I won from Miller Canfield, a law firm in Warsaw had to be presented to me on the ground floor because the actual office was up the stairs. The place I picked to fulfill my practical training requirement had nothing to do with my interests in law but everything with lifts and ramps. Over time, you learn to accept that this is where you are and this is your life. I have the most amazing, giving and loving parents, but even when I was in elementatry and high school going to the theatre with my friends or going on a trip posed a problem. Can my parents carry me up the stairs and at what point would they not be able to do it anymore. And.... is it even fair for them to sacriface themselves  for me. But, as we don't pick our lives maybe I should just cope. I wanted to go places, I wanted to meet people and see things, experience life. So, I jumped at this opportunity, just to try it. I wanted a place where I could be normal. Where I can go to the store and have a drink with friends. I decided to try this for a year. It worked out, but you never know, it could've easily gone the other way. I guess this is part of what kept me so driven through my problems with the LSAT accomodations, law school admissions and green card issues. This is my life now and I'm holding on to it and I'm never going back to who I used to be. And my chair isn't limiting me. It's enabling me, everyday.

Tuesday, May 10, 2011

Help us help more kids: The American problem

My parents went to extremes to provide the best forms of therapy for me. My dad took on extra shifts and part time jobs and worked abroad only to make me better. We've tried many approaches to rehabilitation and I could easily write a little essay on what worked and what didn't in all of them. Some were more active, while others, entirely passive.  I think we started with the Bobath Concept, fueled by theories of brain pathway regeneration, that came to prominence around the time I was born. Years later, when I was 10 we heard of this American method, and it seems the entire cerebral palsy world was doing "the Doman". My mom even decided to go to Philadelphia, from Poland, mind you, and took what I believe was a six week course during which she saw pictures of functional people with half of their brains removed and she was learning that in order to walk, a child must first learn to crawl and move around on all fours, breathe in a plastic bag with a straw and have other people move his limbs in a routine called "patterning". I even had a priest massage me with prayer and alcohol. If there was some other, better method, we would have tried it.  The one thing that really made a difference was the time, months and months spent in the Peto Institute. I've done other things laters of course- My parents would make me go to a pool at the point of screaming and I'm a great supporter of hippotherapy. The Institute  made me mobile, made me walk with sticks and in braces but still [ As I was growing up later I had to give it up as the setup became painful and time consuming.  I really don't like the English name for the Peto therapy, Conductive Education, as it makes it sound like some form of experimental school. The fact is, Conductive Education never promises miracles but has a track record that speaks for itself. It's not a magical cure, but it's hard work based on  principles similar  to your gym routine or aerobics. It's repetition, tailored exercises, perfecting the movement, challenging your body.

I understand that parents are not very trusting when it comes well being of their children and getting their hopes up, but I was amazed how a method that's been around for over 50 years is still not getting widespread recognition in this country. It upsets me and everybody at JKF, because for CE to take it's full effect you need to start as soon as you can. It appears that many children in America are diagnosed with CP very late. The Peto method will still benefit them, but you will not accomplish what you could've otherwise. The second problem is finding a way to pay for that epensive therapy. We are offering it through our Gainesville Academy, which is a charter school. Florida has a system of McKay scholarships in which the parent can decide to take their child from public to private school and the money will follow. While this is a good way to offer conductive education and have it paid by the State, it's available to children K-12. This means that by the time they reach kindegarden, but the time they get to us, it's already late. There's also a fairly viible problem of the lack of information. A lot of American parents don't know they have options, that there are things they could try, that there are alternatives to just sitting them down in a chair. We sense a lot of fear and resentment from some healthcare providers who view CE as competition. I have never heard a conductor [CE therapist/teacher] try to turn anybody away from their current therapy routine and I believe a lot of forms of treatment can compliment one another. But one thing is crucial. CP children need therapy.

We have to reach into the communities in America to educate the parents so they can help their children before it's too late.

Tuesday, May 3, 2011

Being part of something greater....

People often ask me  why I'm so involved with the Jordan Klausner Foundation. I put a lot of free time and often nights into trying to make this organization a success- spreading the word, working on tweaking our Google campaigns, recruiting volunteers.  I guess with my new profession as an attorney I should be travelling across Florida, handing out resumes. I should start earning big money. The easy answer would be, JKF's Director has been one of my greatest supporters since before I even started law school, but that's really not the reason why. I'm first and foremost inspired by his story and feel like I can make an impact here. That my big break will come, not in Miami, Jacksonville or God knows where, but here in Gainesville, helping the children, assisting the disabled community, pushing forward day by day. How can you not be inspired by James, how can you not support what he's doing?  He started JKF no for his own, personal glory, but to help other children, because he couldn't help his son anymore.

Jordan Klausner had Cerebral Palsy and was benefiting from Conductive Education, a fairly established treatment method from Hungary when he died at a very young age. Most people would just turn away from everything relating to this disability, and James really didn't need a second career. He is a  respected physicist, a lecturer and  researcher.  A very busy man of science. Yet, in his son's memory he started an Academy for kids with his disability. How painful must it be for him to see all the other kids progress through every day exercises, when his son should be among them? Yet he cheers them on, and still runs every aspect of the Foundation from payroll to meeting perspective students. I have great faith in this man and I can't help feeling as soon as America understands what Conductive Education is, what it has done for me, for many more, JKF will see better times. And it can't be long. When I close my eyes, I see the CE program supplemented by hippoterapy, hydrotherapy, heat massages legal counseling and other services for the disabled.  Because real "change" starts with people who want to make a difference and what to give something from themselves to others and this is who James Klausner is.